“The first doctor who saw me told my parents and I that it was the chicken pox."

By Julie Mazziotta
October 30, 2018
Courtesy Camille Lagier

When Camille Lagier was prescribed amoxicillin for her tonsillitis in Sept. 2017, she didn’t think much of it — she took the antibiotic before as a child, and never had any adverse reactions. But three weeks later, her body was covered in itchy, burning spots.

Lagier, then 28, went to the doctor in her hometown of Avignon, France after the spots had suddenly spread to her mouth and genitals.

“The first doctor who saw me told my parents and I that it was the chicken pox,” she tells PEOPLE. But Lagier had the one-time infection as a child, so that diagnosis didn’t fit. She then went to her local hospital, where doctors said they weren’t equipped to care for her.

“They said, ‘We are not able to take care of you here, we have to transfer you in Marseille, in the burn unit in intensive care,’ ” she recalls. “I felt lost. The pain was horrible!”

There, doctors determined that Lagier had toxic epidermal necrolysis or TEN, a rare disease that causes the skin to blister and peel. But unfortunately, the only thing doctors can do is stop the medication — in her case, the amoxicillin — that was causing the TEN, and give her painkillers.

“The only treatment I had was morphine to calm the terrible pain,” she says.

After two weeks in the burn unit, and one week in the dermatology department, Lagier was able to return home, but found herself afraid of her “new” body.

“It was terrible. My parents and the doctors told me that my evolution was amazing, but I had scars on all my body, all over my face. It was no longer me,” she says. “I felt misunderstood, alone and desperate. I was wondering if one day I would be happy again.”

Lagier also started to grow angry with herself for how she treated her body before.

“Before my disease I never felt confident. I had a bad body image and I wanted to be perfect,” she says. “But in my bed, in the hospital I told myself, ‘Why did you spend 28 years of your life hating yourself? You were cute, kind and funny, now you’ve lost everything.’ “

At home, Lagier searched online for others affected by TEN for inspiration, but came up empty. But with the help of a therapist and her longtime boyfriend, she started to accept her scars.

“I decided to make a step towards confidence. I deserved that,” she says. “I realized that I had a second chance to live my life, to realize my dreams, and to accept myself and my reflection. This terrible experience showed me that we cannot predict everything in our life, but we can make the path of our life covered with joy, love and flowers.”

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Lagier also started a blog, After My Lyell [Lyell is another name for TEN], to document her experience and provide inspiration for others affected by the disease.

“I want to give hope to people who went through a TEN or for future fighters,” Lagier, now 29, says. “I don’t want to be an influencer or anything else. But I want to be the person that I was looking for one year ago.”

“Patients need help after a trauma like this,” she continues. “They need positive vibes, hope and kindness. One year ago I would have given everything to see a young, confident woman, smiling and telling her story about her TEN. I didn’t have that chance, so I made a promise to myself — to try my best to not let anyone be alone after this experience.”

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